Third chronic diet - new is Celiacs

[Monette Bebow-Reinhard]

Anyone here juggling more than one chronic condition? I've recently added Celiacs disease to my diets for gall bladder disease and GERD. How does one live like this? I don't see the need to toss pans - I'm just going to clean them with vinegar and baking soda. It's not like I don't wash them. I am sooooo struggling with this.

[trents]

Most of us are struggling with more than one chronic disorder. I have GERD and celiac. After taking a PPI for many years I was finally able to wean myself off of them with some diet and lifestyle changes. I still get heartburn occasionally but I take a TUM when I do and it seems to take care of it. Struggling with migraines right now, however.

[Monette Bebow-Reinhard]

Really? So I guess maybe undiagnosed celiacs could cause other issues? I stopped the PPI when I heard it could cause malabsorption of nutrients. Then he put me on Sulfracate which is horrible to take. So then you have two diets? For GERD I can't have sparkling water, which I love, spicy foods, beans, broccoli (that's killing me), and even apples at the wrong time of day. For my gall bladder it's no fried foods, no eggs, low fat dairy only, and of course, all three demand smaller meals more often. But how to find gluten free bread without egg? Right now I'm eating gluten free bagels for breakfast but the egg in them bothers me.

[trents]

Undiagnosed celiac disease typically causes many problems. It has long fingers. And when you have one autoimmune disease you can expect to develop other autoimmune conditions. They tend to cluster, to bring their cousins along. Some things are often corrected when we go on a gluten free diet (e.g., intolerance to dairy) but other things we live on with.

[Monette Bebow-Reinhard]

I was diagnosed with a low functioning gall bladder long before this, first having symptoms with pain in that area over a decade ago. I suppose it's possible I was already being affected by celiacs, but doubtful. I'm told Celiacs is genetic, and likely my mother had it and died from malnutrition. I'll never know. But I know my grandmother had GERD, which I now also have, and an aunt had gall bladder problems but never had it removed.

Suicide by gluten sounds pretty good sometimes, except I hate being nauseous and don't want to go like my mother did.

Then there's the problem of being diagnosed first as anemic. My mother-in-law died of pancreatic cancer that they didn't catch in time because they just treated the anemia without finding out why she had it. I'm not genetically related to her but my husband does the cooking and that's why my gall bladder went in the first place.

It's hard to believe this is my body anymore.

The doctor says once my small intestine heals, I should be able to eat gluten again.

[trents]

Your doctor told you that once your small intestine heals you should be able to eat gluten again? That is absolutely wrong! The intestines should heal but the autoimmune condition known as celiac disease will be with you for life! It too has a genetic base and the genes won't change. You should never go back to eating gluten.

Edited October 4, 2023 by trents

[Monette Bebow-Reinhard]

Yeah, I thought that sounded wrong too. And I had the endoscopy last Friday, but I had to ask what he saw in my haital hernia that a different doctor diagnosed me having back in 2001 and he says I don't have that. Ah ... what? No GERD? No acid reflux?  Well, okay, I'll go off that diet then.

I know, sometimes nothing they say feels right. But what else can we do? I just want to get over feeling tired. I have to much to do and just feel like saying "I don't care anymore."

[trents]

We know something about the genetic basis of celiac disease and are discovering more as time goes on. But the genes lie dormant until there is some kind of triggering stress event that turns them on, for example a viral infection. Once they are turned on they stay on. Once this has happened the immune system mistakes gluten as an invader and attacks it as it comes in contact with the villous lining of the small bowel. This causes inflammation and, over time, damages the villi that line the small bowel such that they can no longer absorb nutrients efficiently. Many of the health problems that spin off from celiac disease are therefore related to nutritional deficiencies, even though we may be eating well.

It can take two years or more for an adult to experience thorough healing of the villous lining of the small bowel once he/she begins the gluten free lifestyle. In the meantime it is wise to go heavy on vitamin and mineral supplements in order to counteract the nutritional absorption problem. Are you on any vitamin and mineral supplements?

I am also including a link for a primer on achieving a gluten free life. Studies show that most people who believe they are eating gluten free are actually only achieving a lower gluten intake. This is especially true of those who still eat out. And it is not enough just to discontinue major sources of wheat, barley and rye such as bread and pasta. One must become aware of how gluten is hidden in the food supply and become a habitual ingredient label reader.

 

Edited October 4, 2023 by trents

[Monette Bebow-Reinhard]

Thank, Trents. I agree, it's so very difficult. I am taking a one-a-day but it seems to wear off by mid-morning next day. Should I up that to two a day? I wasn't sure that would be recommended. I know Doc didn't say anything. I've had two iron infusions. Getting blood tested again on Friday. But I'm not going truly gluten free until I eat the crap I've already bought. Breakfast and lunch are, but dinner is not, yet. Let's say I'm still adjusting, that's how new this is to me, like two days old.

[Monette Bebow-Reinhard]

Has anyone tried using GliadinX when dining out? Just in case? I headed out of state for work next week and I worry about this. I have a very active lifestyle and can't be pinned to my own kitchen counter.

[Scott Adams]

I use GliadinX whenever I dine out, and others on this forum do as well (disclosure--they are a sponsor here). 

Many studies have shown that the enzymes in GliadinX which are AN-PEP can break down small amounts of gluten in the stomach, before it reaches your intestines:

https://www.gliadinx.com/publications

[trents]

The concentrations of vitamins in a multivitamin product are too low to have much impact, especially in the short run. And it sounds like you need a jump start on nutrition.

On this forum we commonly recommend, in addition to a multivitamin:

• a high potency B-complex
• 5000-1000IU of D3 daily
• 200-400mg of Magnesium glycinate or Magnesium citrate daily (these two forms of magnesium are better assimilated than more common forms)
• 50 mg gaily of zinc

Any supplements you take should be checked for being gluten free as wheat starch can be used as a filler in pills. Costco's Nature Made, Nature's Bounty and Kirkland Signature brands are excellent choices. They will label them gluten free if they are.

I realize you don't want to waste already purchased food but I can't emphasize enough how important it is to eliminate all gluten sources from you diet immediately. Any delay in going gluten free will postpone healing of the small bowel villi and increase the risk of permanent damage to various body systems.

[Monette Bebow-Reinhard]

Thanks I'll print those recommendations for my next visit to the drug store. And since I don't know how long I've been gluten intolerant, as the doc says, another day can't hurt. I'll take my chances. Not made of money, and honestly, since I was hoping to be diagnosed with anything BUT this, I'll take my chances on small amounts for another day or two.

[Scott Adams]

You may be able to get by with One A Day brand supplements, which include nearly all you might need. They are also gluten-free.

[Monette Bebow-Reinhard]

Oh, that's good to hear, Scott, as that's what I'm taking and I wasn't about to toss them! (grin) But the original comment was that even when I take one, and feel less tired for a while, it doesn't seem to last the full 24 hours.

[trents]

You might also need an iron supplement for a time. Your fatigue is probably related to your anemia.

[Monette Bebow-Reinhard]

Additional? As the One a Day supposedly has 100%. Wait, let me check. Yup. Plus I'm eating more beef now, I was pretty much avoiding it. Can't eat pork - won't eat pork. I'll see what Doc says after my blood test on Friday.

Thanks, you've been so helpful!

[trents]

100% RMDA is peanuts when it comes to correcting vitamin and mineral deficiencies. 100% is maintenance dosage.

Edited October 4, 2023 by trents

[Monette Bebow-Reinhard]

I'd like to avoid constipation, though. I'll see what the blood test shows on Friday. I do agree these other suggestions I just printed make sense.

[Raquel2021]

3 hours ago, Monette Bebow-Reinhard said:

I was diagnosed with a low functioning gall bladder long before this, first having symptoms with pain in that area over a decade ago. I suppose it's possible I was already being affected by celiacs, but doubtful. I'm told Celiacs is genetic, and likely my mother had it and died from malnutrition. I'll never know. But I know my grandmother had GERD, which I now also have, and an aunt had gall bladder problems but never had it removed.

Suicide by gluten sounds pretty good sometimes, except I hate being nauseous and don't want to go like my mother did.

Then there's the problem of being diagnosed first as anemic. My mother-in-law died of pancreatic cancer that they didn't catch in time because they just treated the anemia without finding out why she had it. I'm not genetically related to her but my husband does the cooking and that's why my gall bladder went in the first place.

It's hard to believe this is my body anymore.

The doctor says once my small intestine heals, I should be able to eat gluten again.

If you have celiac disease please do not eat gluten again.  This is gluten free for life

[Monette Bebow-Reinhard]

I appreciate your concern, Raquel - everyone here has been great, and just what I need!